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Wolf-Hirschhorn Syndrome

What is Wolf-Hirschhorn Syndrome?

Wolf-Hirshhorn Syndrome is the result of partial deletion of the short arm of chromosome 4, resulting in various physical and mental conditions.

 

Wolf-Hirshhorn Syndrome is the result of partial deletion of the short arm of chromosome 4, resulting in various physical and mental conditions.
Acknowledgement of Wolf-Hirschhorn Syndrome has not been added yet.
2.0http://www.orpha.net
Synonyms for Wolf-Hirschhorn Syndrome has not been added yet.
Cause of Wolf-Hirschhorn Syndrome has not been added yet.
Symptoms for Wolf-Hirschhorn Syndrome has not been added yet.
Diagnosis of Wolf-Hirschhorn Syndrome has not been added yet.
Diagnostic tests of Wolf-Hirschhorn Syndrome has not been added yet
Treatments of Wolf-Hirschhorn Syndrome has not been added yet.
Prognosis of Wolf-Hirschhorn Syndrome has not been added yet.
Tips or Suggestions of Wolf-Hirschhorn Syndrome has not been added yet.
References of Wolf-Hirschhorn Syndrome has not been added yet.
symptoms of WHS Created by kolbiskc
Last updated 1 Feb 2013, 04:47 PM

Posted by kolbiskc
1 Feb 2013, 04:47 PM

Has anyone else with a WHS child had chronic sinus issues?

Welcome Brady! Created by Eric
Last updated 25 Oct 2008, 07:30 AM

Posted by Aileen
25 Oct 2008, 07:30 AM

Hi Eric thank you for your lovely message! I am spending the weekend with my Host Family (a family that look after me to give my own family some respite). I enjoy staying with them, I stay one weekend every month with them and I have been staying with the same Host Family for the past 11 years. Keep in touch. From Brady

Posted by Eric
24 Oct 2008, 01:11 PM

Hi Brady! We are so glad that you have joined our site and we hope to have more joining you shortly. I have a brother named Ryan who is 19 and a sister that is 22 named Alison.

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CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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Community User List

My Daughter has 4p- Wolf Hirschhorn Syndrome but also had Kawasaki Disease at 5 yrs. I am pleased to be a part of this network and look forward to helping out other families needing support.
My daughter Nelebel Noble has 4q21 micro deletion syndrome. Her birthday is May 12, 2006. She was born with global developmental delay including hypotonia, moderate to severe mental retardation,...
Mother of a child with a 5p duplication and a 4p deletion.
My daughter Caroline has 4p- Syndrome. She was born in August of 2000. She has an older brother and is a very happy child.
I am grandparent and guardian of 1year old boy with wolf hirschhorn syndrome and wish to hear from other families with same condition. my email is dotti1022@comcast.net; also with tracheostomy,...
I am 15 years old and my mum is writing this for me.

 

I have Wolf-Hirschorn Syndrome.

 

I go to a special school, I am a happy person with a magnet of a personality!! Everyone loves me and...

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symptoms of WHS

Created by kolbiskc | Last updated 1 Feb 2013, 04:47 PM

Welcome Brady!

Created by Eric | Last updated 25 Oct 2008, 07:30 AM


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